I really appreciate this forum. This is a great forum!
When my wife was diagnosed with CLL in November 2020, I was in a frustrating situation. We live in Ontario, Canada, and not very familiar with the system since we been here not for a long time. The Hematologist just spoke on the phone (appointment on the telephone) it is CLL and it is W and W condition. Then I consulted with friends and medical people in our connection. Slowly I found this group which encouraged us very much. I found very knowledgeable people in different fields from the disease to the lifestyle of CLL people.
Now, I am starting to get information about the insurance to cover CLL medication and treatment in Ontario Canada. We do not have private medical insurance except the Ontario Health Insurance Plan (OHIP) and her work insurance (job). I raised this issue in my previous posts and got information that the Ontario trillium benefit may cover the CLL medication but we are no familiar with the process how to apply? We want to feel comfortable so I am asking insurance companies about these issues. Most of them said they need a perfect medical report to be insured. She has CLL which is may not be a perfect report for them! Therefore I am wondering how to overcome this problem? My impression is there would be someone in this forum who is familiar with this issue? So I will be glad if you plz share your experiences and advice us on this issue? If you do not feel comfortable you can send me a private message. Wishing you all the best.
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Thank you Smith123456, there is Ontario Health Insurance Policy which covers visits of GP and specialists and most of the Laboratory tests but not medicines. Here, I am much concerned with medicines as CLL medicine is expensive and I am not fully aware of how to cover it when there is no private insurance?
Ibrutinib (IB) is completely covered in Alberta and likely in other provinces - I understand it is covered in BC. The newer generation version, Acalabrutinib (sic?), isn't currently covered by our province and my private plan apparently doesn't cover it presently but that could change down the road. W and W can last for years but varies from patient to patient depending on age at diagnosis and which variation of CLL one has. I was on W and W for 5.5 years as mine is the medium-risk Trisomy 12. W and W is shorter for high-risk and much longer for lower risk varieties. One thing to remember is that CLL is extremely predictable: your wife's hematologist can predict the progression with amazing accuracy. My GP has patients who were diagnosed in their 70's (the typical age bracket for diagnosis) who went on W and W for 20-30 years and died WITH it rather than FROM it. Lucky them. The average age for diagnosis is 71; I was 53 at diagnosis. A diagnosis in the 50's is always more concerning. Hope this helps
CoachG, Thank you very much for your response. My wife is under the W&W condition but we did not have the opportunity to speak with the Hematologist in person and discuss. I am not sure we still need private Insurance or OGIP will cover it? The type of CLL marker can be determined from the FISH test and generally here in Canada they order it only when treatment is needed?
See reply from rvles. Very good. Yes FISH was done closer to treatment time. Mine was ordered about 12 months prior to the start of treatment. Key is: doubling of lymphocytes in a six month period. So curve starts nearly flat and then starts to climb. Even then, the doubling doesn’t happen too quick. Lots of blood tests up to that point.
It's the rare GP who knows much about CLL. It is best to have your wife's haematologist determine the 'tempo' of your wife's CLL and schedule blood tests accordingly. That may take a year or so to determine, but it may reassure you to know that some of us only have annual blood tests, although 3 to 6 monthly is more common, with monthly or occasionally more frequent testing done when there is any concern that the CLL status may be changing. My specialists have always given me multi-use blood test forms along with a recommended test schedule (reviewed each appointment), while encouraging me to also have one earlier than scheduled if I became unwell.
Neil Thank you very much for the nice response. My wife has high cholesterol for the last two years and her sugar level was borderline so we wanted to see her this year and asked for a recommendation for blood work. Wishing you good health Neil!
I would say that CLL is not that predictable and there is hope in that. I was given 1-2 years to live (in Ontario) by a hematologist in a big city hospital (after an initial bone marrow biopsy) and 7 years later, still no symptoms. Plus, in that time the number of potential treatments has exploded. So, the hematologist can only guess at the potential length and progression of your disease
in my case, my hematologist told me at our first appt that I would start treatment in 5-7 years. We did the FISH test at 3.5 years and I started treatment a year later (4.5 years). Might have been later if mine wasn't medium risk Trisomy 12. With iBRUtinib, the old rules on life expectancy are apparently out the window, which is good. Otherwise, I'd be on about a 9-year timer. With iB, life expectancies are just guesses now but the expectation is now "normal life expectancy". Glad to hear that your situation is better than initially thought.
When I say predictable, what I mean is that, as I understand, the White blood cell and lymphocyte counts tend to grow on a curve and that curve is predictable. It is not an erratic growth path that can suddenly spike.
See the chart below: smooth increase with doubling in last 6 months before treatment followed by rapid decrease in first 3-4 months of iB treatment. Blood tests were 6 mos apart, then 3 mos starting in 2017, then 2 mos starting around time of FISH test, then monthly once treatment started. 6 mos prior to treatment, doctor said I would start treatment in 6 mos and that was bang on with the doubling of WBC and lymphocytes. I.E., predictable.
I agree with you, in general, but in my case blood cell and lymphocyte counts have hardly doubled in 5 years and spleen and nodes remain normal. So, it may make sense not to start treating.
But my neutrophils have been severely below normal (0.2-.0.5) for at least the last couple of years. It’s the increased probability of a “catastrophic” bacterial infection that made my oncologist recommend initiating Acalabrutinib treatment last month.
All I’m saying is that while a large number of cases follow your curves, there are a significant number of “outliers” - cll cases that do not follow the norm. This can give one a sense of hope where the cll progresses very slowly (like in my case)
As we study and follow every other contributor’s journey, we might remember that every case will be slightly or significantly different. And this should give us hope.
In Canada, CLL patients get their treatment funded by government health insurance if they are not already covered by private insurance . The only limitation is that not all treatments are funded in some provinces, but there are other ways that non-funded treatments can be funded.
Have you seen the website of the Ontario Drug Access Navigators, the people in hospitals how assist patients in accessing drugs? The site describes how you can access drugs in Ontario on this page: odano.ca/resources/
If you click on Ontario Drug Benefits Program you will find a page with explanations on how drugs are funded.
For CLL specific treatments in each province, the CLL Canada website has a page with links to documents which summarize the funding policies for individual treatments in each province on this page cllcanada.org/treatment-acc...
You can join CLL Canada to receive Canadian CLL news 4 times a year and support its advocacy efforts on behalf of patients. There is no charge.
In summary, when your wife will need treatment, it will be funded.
Rvles thank you very much for your insightful information. You are so kind and cooperative. Your information is very useful which I was searching. I may contact you in the future after going through all.
First time writing on the forum but have been reading for a few years. I am in BC on W and W and so far everything has been covered by provincial medical, even the test to see if I am mutated/unmutated. As far as I know, treatment will also be free but as someone already mentioned, maybe not all current medication is covered at the moment. This could change before your wife needs treatment.
My monthly IVIG was covered by Ontario and when I switched to weekly SCIG at home a year ago, this was covered as well. Switched to SCIG both for safety and convenience and for a more constant IGG.
IVIG is generally given monthly in the hospital intravenously whereas SCIG is transfused under the skin in your abdomen with tiny needles (1/4 inch) painlessly at home on a weekly basis (about an hour vs 4 hours for IVIG). You do it yourself at a time when it is convenient after a few weeks in-home training. Supplies are sent to you for free on a regular basis and you pick up the immunoglobulin at the hospital once every three months, also at no charge.
I live in a small city in the Niagara area and agree 100% that we are blessed to live in Canada for a large number of reasons including health care and respect and tolerance of others.
Hi, my journey started in 2005, 13q deleted, age 58 and 11yrs W & W. First treatment was Fludarbine & Rituximab. The Fludarabine worked ok, but the Rituximab nearly killed me from a severe reaction. I had maybe a year or so in remission, then another treatment, Bendamustine, then Ibrutinib which I could not handle on full dose. After a long break and a change of doctors I started back on Ibrutinib April 30th 2020 on one pill per day and after one month I went on two per day since. My blood work is pretty much in the good range for the last couple of months. The side effects of Ibrutinib can be quite serious, but in my case they only lasted a afew days. The side effects come in the form of muscle aches, joint pain and headaches, plus swollen Lymph nodes. All the best on your journey from B C Moqua
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